ALS AWARENESS MONTH A Son Honors his Father

Tell me about a health crisis you’ve walked (or crawled) through. Was it your own? Was it your child? Your parent? Your sibling? Your spouse? Your neighbor?  

Everyone has an answer to this, either now or in the future. Whether we pray for healing, or go to the ends of the earth (the internet) and our insurance policies to search for remedies, comfort, and answers, we’ve been there. We’ve been there, whether we take a hot pot of soup or a pie, send a card, or follow the online updates. Whether we have difficult conversations about options with family members or leave a job to be available for all of the medical appointments, we’ve been there. 

There is a Storm

Being there is being in a storm. A sleepless, routine-wrecking odyssey that stretches us beyond what we thought we were capable of for days, weeks, months, or years. And on the other side, with healing, or the death of our loved one, we are changed. With loss, we walk through our grief for the rest of our days. And for some of us, we acknowledge the pain and work through it with writing and advocacy. At least that is what my friend, Scott, is doing. 

Scott LaMascus braved this stormy nightmare with his father. A giant of a man, salt-of-the-earth Oklahoma rancher, church and community leader, loving husband, proud parent and grandparent, avid tinkerer – Scott’s father succumbed to ALS in 2024. For those who know, you know. It’s what Lou Gehrig had. The famed Yankee’s first baseman who hit four home runs in a single game died from amyotrophic lateral sclerosis.

Lou Gehrig’s Disease

Despite the infamy of Gehrig’s name being attached to the invariably fatal disease, the notoriety has not led to a cure or even timely care, something known by anyone who has tried to get an appointment with a neurologist. Still, May is ALS awareness month to raise funding for more neurological care, to shorten wait times for patients, and ultimately, find a cure.

Scott tells of his family’s year with ALS. In story, in verse, and in hope. Through the Meinders Neurology Institute at Mercy Foundation in Oklahoma, ALS Awareness Month aims to build a deeper understanding of the experience of ALS to find better services, livability, and effective treatments until there is a cure.

One way we can help is to purchase Scott’s chapbook, The Edited Tongue: A Family’s Year with ALS. The poems grapple first with the father’s literal loss of voice, then the frustrating search for a diagnosis, increased caregiving stress, and daily devastations of each new loss brought by the brutal disease.

“This stunning poetry gives voice to the voiceless. For everyone who has lost someone to this cruel disease, Scott LaMascus’s words bring a healing truth and beautiful compassion,” said Colette Freedman, author of a feature film about ALS. “Sister Cities” is Freedman’s novel, play, and screenplay about ALS based on her own family’s experiences of the neurogenetic disorder. The 2016 film stars Stana Kacic, Jesse Wexler, and Alfred Molina in a large and talented cast. Freedman was a mentor for LaMascus in his MFA program at Antioch University, Los Angeles. He graduated in June 2024, five days before his father passed away.

A Sacred Moment

When I arrived at the 2023 Thanksgiving table at my parents’ house on our family’s ranch in rural Oklahoma, I was not surprised that Dad did not stand to greet me. I bent to hug him, instead. He had been getting weaker, and we had talked frankly about his breathlessness the last time I’d helped him spread bales of alfalfa hay for the Angus cattle he raised. We also knew that Mom had been blending his meals for a few weeks to help him with choking hazards. He had experienced some blackouts his doctors had attributed to mini-strokes and dehydration. All this had been developing for about a year despite his otherwise generally good health for an 85-year-old man. He remained exceptionally sharp in mental focus and ability. What did surprise me that Thanksgiving Day was that Dad didn’t speak. Rather, his attempts to speak to us were both limited in quantity and virtually unintelligible to everyone except my mother, who translated him to us as if he were speaking Swahili or Mandarin. I was devastated inside, but our family is a stoic bunch of fourth- and fifth-generation Oklahomans, accustomed to taking difficult and unpredictable things with external poise, at least. We all adjusted as gracefully as we could manage to enjoy our holiday meal, the first time in my 62-year-old’s memory that Dad did not begin our feast with a prayer of blessing.

I held my emotions and thoughts in check until my wife and I were back in the car driving home to Edmond. She is a Mercy physician in primary care and urged me to get Dad to a neurologist as soon as possible. Soon, I was helping Dad and Mom navigate into the office of Dr. Nicole Bowden at the Meinders NeuroScience Center at Mercy hospital in Oklahoma City. 

On the day of our visit to Dr. Bowden, Dad was still attentive, mentally alert, and completely in charge of his healthcare. He signed in for himself. He also carried a small gathering of papers, neatly organized, listing his medications, some insurance matters, and some diagnostic findings from his primary care provider. After a short visit with Dad, Mom, and me, Dr. Bowden professionally conducted an extensive physical exam, including Dad’s reflexes and muscle tone, for example. Then, with great kindness, tact, and professionalism, she told Dad that she suspected ALS and would refer him to the tests needed to confirm her preliminary findings. She gently and professionally explained what ALS means – it is always fatal.

Dad’s instant response was unforgettable. The first poem in my chapbook about ALS is a poet’s-eye-view of what transpired next. It is called “Blackbird Lets His Papers Fly.” That moment was a remarkable pivot for Dad and our family’s life. Dad’s instantaneous outburst was shocking to me. My stoic, tender, and quiet Dad responded with a wild gesture, loud and unintelligible cries, and uncontrollable tears, a response I later would learn is symptomatic of “bulbar onset” ALS. His emotional control was being disrupted by amyotrophic lateral sclerosis, a neurogenetic disorder with few treatment options and no hope for a cure.

Thus far, the experience in Dr. Bowden’s office would have been inflected with the sacred no matter what. Eternity had just opened in front of us for an unclouded glimpse of what lay ahead for the man we loved. Once Dad was quieter, I told Dr. Bowden that Dad had been a man of discipline and self-control and that our family were people of prayer. I wanted her to know the man I knew, not simply a patient who she’d met only after his emotional control had been destroyed by a mysterious and powerful disorder. I felt she saw my Dad, not the disorder. Dr. Bowden asked if we wanted to pray together and I led us all in prayer in her exam room. Our surprise and dismay at a hopeless diagnosis had unexpectedly expanded into a space of family unity, peace, and divine presence with Dad’s physician, too. My 2024 was crowded with sacred moments of losing a parent to a devastating disorder. But it all began with an exceptional, truly sacred moment at the Meinders NeuroScience Center with Dr. Nicole Bowden. Our moment of diagnosis cried out for prayer. I am grateful Mercy is focused on Christ-centered healthcare, where this sacred moment would be honored as a matter of institutional culture, not because I labored to achieve a personalized service. That is a meaningful difference. Prayer was not a strange thing to be tolerated. It was a natural occurrence. Our truest prayers are often poems–the spontaneous overflow of our hearts to God, however unedited the first drafts may be. – Scott LaMascus 

The Edited Tongue: A Family’s Year with ALS
Los Angeles: Bottlecap Press, released 12 February 2025. ISBN 9781962390842
Purchase your copy here.